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Discussion Starter #1
Hi everyone

you probably don't remember me because I haven't posted anything for ages - that's because everyone was being so cautious with a diagnosis that I truly believed I didn't have lupus - however this week it was diagnosed along with fibromalgia (or however you spell it) It was quite funny - the rheumy had to say it 3 times - I was so sure it wasn't lupus. Anyway he said it was down to the anti ds dna postive test that swung it (although I was led to believe that it was only borderline positive - but he showed me the paper and there it was in black and white - positive. So that's that - the good news is that I'm off the steroids - after two years hurrah - altohugh I did have to have a steroid injection in the butt ... so its plaquinil for me and thats all! so here I am a fully paid up member of the loopie gang ;) hello!!
 

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Hi JB1,

I'm so glad you have finally got the diagnoses purely so that the correct base treatment i.e Plaquenil is started!

It was the anto ds dna test that confirmed my diagnoses in Dec 2007!

How are you feeling and coping with coming off the steriods - did you have to decrease slowly?

Take care!

Lesley
 

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Hi JB1!

I also had my lupus diagnosis confirmed recently with a positive anti-dsDNA test result. I was a bit more fortunate than you, it seems. My cautious rheumy called it UCTD when I first saw her, and was treating me with Plaquenil and an anti-inflammatory already.

It's a bit of a mixed bag, isn't it? You are relieved to finally have a name to put on the problem, but now the problem is confirmed. Even after 2 years on the diagnosis path, I still had a bit of a pang when she wrote lupus as my official diagnosis.

Good luck, and I hope the Plaq qorks quickly for you!

Terri
 

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Its nice to have a name for why you feel so crappy but now its having to deal with the disease and explain to everyone, when I was first diagnosed I was lupwhat?!? I had never heard of it before, I went to 4 different doctors to confirm I had a positive ANA and high sed rate for over a yr now my antidsdna is double the high and my ANA is normal my rheumy seems comfused I am like well the prednisone is keeping the ANA normal but since I am flaring the antidsdna is high!!! Its so hard to keep sane when you feel like crap and your trying to feel normal when actually you don't feel normal!!! Does that make sense:hehe: :rolleyes:

Take care and I pray you will be well along with everyone on this board my 9 yr old son prays every night for everyone diagnosed and for a cure so know that we are praying for everyone here!!!:)
 

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Hello,

We haven't met before, but I'm gald for you that your diagnosis journey is over. Here's hoping that you continue to do well enough to avoid the steroids :)

Katharine
 

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Hi JB1 :hello: :wavey: :hello:

First of all
to the land of the lupie group, you are an official member now.

Joking aside, finally getting a dx doesn't make you feel any better but it does help the docs know how to treat you and what to treat you with.

I hope now that you are dx and you have been put on the correct meds for lupus things improve for you and you start to feel better.

Take care :hug: Jo :hug:
 

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Discussion Starter #7
thanks everyone - what lovely replies! At the moment I'm just so happy to be off the steroids that nothing else has really sunk in - I'm just looking forward to my face going back to it's normal size! :) Wishing you all health and happiness xxx
 

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:) Hi Jb, and a warm welcome back. I am glad that you have finally got a dx, so now you know what you have and that you are not going crazy. I am happiest that you are off of that prednisone, that stuff is the bottom of the pits.As for the Plaquinel, you should like it very much. It is supposed to take 3-6 months to "kick-in" but on me it took nine, and on others here, it was less than three. Thats what is true around here, we are all different, but we are all alike. The plaquinel is easy to take,with no side effects that I have heard of yet, but maybe someone has had some. Hope to see a lot of you, ask any questions you want,and remember that we are all here to support and help in any way that we can. Be well(I too have lupus and fibro):wink2:
 
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